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ITP Support Association
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Going Crazy!

My 11yr old was diagnosed with ITP Nov 29 with a count of 0. Was admitted into All Childrens hospital and given 2 IVIG treatments that brought numbers up to 35....that was great! But has now dropped to 1 and has been holding at 1 for 3 weeks now. Put on a 4 day dose of steroids that did absolutely nothing for her. She does have some bleeding from time to time because of the quarter size blood blisters in her mouth that burst occasionally but because I can get it to stop after 8 hours they will not try another course of treatment. Dr advised me to ride it out. Very frustrated to say the least. Has anyone else had this issue with a pediatric ITP case? Looking into another Dr for second opinion as they say it is not hereditary but her father also has ITP. Any suggestions would be great

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Try revolade tablet with the consent of your doctor.

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Tough times,please hold on,she will be fine.Give her tons of green vegetables and fresh fruits.It will help for sure.Best wishes to your family.

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I'm agree with you. I had ITP but I'm in remission now. To get it I had to change many things in my life, starting from my food. I mean, eating more fruits and vegetables as you said, but also stopped my consumming of milk and processed food.

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I know it’s hard to hear. I have an 11 year old so I wondered how I would approach this if it were me. I have ITP and I have had a 2 nd opinion that didn’t work out so good and ended up going back to my original oncologist who had been monitoring it from the online records. You can ask the doctor if he can try another course of treatment. I tried NPLATE but it caused me to have an analyphtic severe reaction to it and was in the hospital for 5 days. However I have a liver disease and they shouldn’t have given it to me. Mine got down to 29 and I have an enlarged spleen too Of 20 cm. So they have to be careful of my treatment due to other serious chronic diseases that have no cure. You can try a second opinion. Has the doctor done any tests to rule out other things? I am in a wait and see approach too. All they do is monitor me and if they go below 30 again my spleen may come out which I don’t want to happen. I am praying for you and your son.

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Her current doctor said no reason to think anything other than ITP as her other levels are perfect so......its a waiting game. She woke up this morning with huge dime size blood blisters inside her top and bottom lips that are painful. Another CBC tomorrow but not seeing numbers any higher than 1. I pray they are and now school wants to have a meeting to see if she needs special accommodations

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So sorry to hear of children suffering in any manner or form. Keep searching for the answer and get advice on a diet that will help. I am looking into Hemp extract in marula from the hemp hub hemphub.co.za have a look and see if children can use it.

Thoughts and prayers with you and your child.

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Hi . Do you know for what is used this hemp extract? Which are the benefits

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Hi chickensmum, no wonder you are going crazy. She must be down with it too. 11 is a difficult age for a girl☹️. My son(7) has had itp for 1 and 1/2 years but lowest levels of platlets have been 4 and that is worrying. He has had the 4 day course of steroids which did nothing and also 3 treatments of immunoglobulin, 1 when he broke his arm, 1 when he has a bad spontaneous nose bleed and 1 before we went on holiday as I was scared to travel with him. All the immunoglobulin treatments have been successful but only raised platlets for a couple of weeks. I have often wanted a second opinion because it is so frustrating. Generally they just monitor him. Where about do you live? I think this has a lot to do with treatments. Please take care and hope to hear back from you xx

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I do have an appointment with another dr this Monday but not local. I hope this dr will do something for her. With a child having it for 1 1/2 yrs not sure how your holding it together. Good luck

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Thank you for the reply....we are living in Florida

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Dear mom I totally understand what agony u r facing.With kids its a srange case as sometimes they survive even with very low counts.Anyways U should take second opinion.My 10 year old has been coping with below ten count for three years.Yes we have to watch him all the time n he catches infections very fast but overall he is managing his school.When I feel he is fatigued I make him rest which is hard for kids his age,in case of bleeding he needs transfusion but thank God not very often. Steriod Prednisolone were tried but platelet raise was temporary so we stopped n now he is on no medication.. Dont worry too much as it wont help.I hope ur child cn slowly but consistently recover n survive even with extremely low count.Wishing her luck ....

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I know your pain. I was there 2 years ago when my 16 years old son was in the hospital for 2 weeks with his platelets in 4. He had a very bad reaction to IVIG to the point that the doctor decided that he was allergic to it and cannot be treated with IVIG again. The difference is that prednisone worked pretty good for him. He was on treatment for about 2 months until he reached a “ safe number “ of platelets ( around 100). He is now 18 and his platelets are around 200. I started reading about ITP because even when I am a RN, it’s not common to see young kids with ITP. I started him in a diet rich in fruits and veggies. He had papaya juice with no sugar every morning before any other food and I started him taking a vit C daily with breakfast. He is still taking the Vit c every morning. Just try all the natural remedies that you can!! Be strong! Hopefully is just an acute episode and your son will be ok soon 🤞

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Hi. I hope you are doing fine. So your son now has a stable number of platelets?

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Hi chickensmom, I can only imagine what you’re going through. Has your daughter been with immune thrombocytopenia? Children offen develop itp after a viral infection that triggers the immune system to malfunction. What’s the treatment plan now that IVIG and four days of steroids failed? I would be very uncomfortable with her at home with a platelet count of 1-3 thousand, the risk of a serious bleed is too great. Please contact your hematologist, she may long term steroids to stabilize her counts. You must ask for a plan of care, children usually do much better than adults. I’v had Itp since early 1990s but didn’t start treatment until 2010, with treatment my platelets range 30-80 thousand and am acutely aware that a minor auto accident that engages the air bag would cause massive bleeding in my chest and stop my heart. A platelet count of less than 10 thousands increases the risk a a cerebral hemorrhage. Please contact your hematologist!!!!! Kyriak51

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Good morning. Her current doctor told me "to ride it out". We do have another appointment with new doctor on Monday for a second opinion. Having her home and at school with a 1 count is very scary but again I watch her like a hawk!!!! I have an appointment with her school today....they are concerned she needs special accomodations. Her current doctor does not want to try another treatment right now and I am very frustrated! I hope someone will do something. I am getting her a medical bracelet in case something ever happens emergency services will know about it. Thank you for your feed back

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Try the East Indian 'goose berry', Amla, also called amalaka. It has helped me greatly. Papaya leaf juice is also supposed to be good but I can't find it in my area. Sending blessings to you and your daughter.

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kyriak51 here, happy to hear you will be

seeing “new doctor on Monday”’, please, please tell me your new doctor is a Hematologist/0ncologist!! When was the last platelet count? I have no doubt that you are “watching her like a hawk” and she is old enough communicate increased bruising i.e. bleeding or blood tinged urine but what about bleeding you or she can’t see? Evidence based practice requires intervention for platelet count of 10 thousand or less such as platelet transfusions or other treatments to decrease risk cerebral bleed, ( ruptured blood vessel causing bleeding inside the brain), such as head trauma; does your daughter play soccer? I don’t want frighten you but it doesn’t much force to cause bleeding in those of us with low counts.

Last year I tripped and fell 12 inches on a carpeted floor on my right hip which resulted in a two centimeter bruise, my platelet count that week was about 40 thousand; 18 hours later the bruise had increased to 19cm by 20cm. When I start bleeding it will continue for three days with out intervention. I contacted my doctor went to the emergency room and received 3 units of platelets to stop the bleeding; platelet count dropped to 22K and hemoglobin dropped by 0.9 grans, one gram drop is the equivalent of 500ml blood loss. Imagine if I had falling backwards and hit my head instead of my hip and started bleeding inside my head, not a pretty picture. Fortunately I understood the risks of bleeding and took action to minimize the potential damage. As I said before, the more you know about disease the better the care you receive. Be well, speak to your Hematologist insist ona plan of care.

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Yes new dr is an Oncologist. Had labs done yesterday and she has now been at 1 for 5 weeks. Current dr will not treat this is why we made an apointment for second opinion. Just yesterday had to set up a health plan at school for her. I have also ordered her a medic id band in case of emergency. I do understand the risk of bleeding as her father was also diagnosed with ITP about 7 yrs ago so I new about the illness. She has had 2 IVIG treatment with no luck and 1 dose of steroids for 4 days that didnt help . We see her current dr once a week and labs right now twice a week. He does not seem concerned

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kyriak51: Where do you live in the UK or USA? I live in Chicago in country “ failure to treat” would be concerned “negligence/malpractice “, if a 4 day course of high dose of dexamethasone and two infusions of IVIG

had no effect perhaps a longer course of prednisone should be the next step as it is in the US. You mentioned yesterday labs, what was her hemoglobin and hematocrit, have those values decreased over the past 5 weeks?

I just returned from the clinic, my platelets dropped to 30K as did my hemoglobin, hematocrit and red blood cell count. I seem to be bleeding more than my moderate bruising would indicate. I did receive my usual Nplate (romiplostim) injection so I should be feeling better tomorrow.

It’s good that the school has a health plan what’s included in your plan? How is your daughter coping with this situation, what’s her name? Be well:)

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her hematocrit is 32.9 and hemoglobin is at 11.6. That is about where those numbers have been for the last few weeksand her rbc is at 4.11. I am beginning to feel like a freak always compairing numbers! She is doing ok with it.....I am having the harder time. She is tired if being sick and tired but in great spirits!!!! The health play includes 100% make up time if she is out to long and also a teacher that will come to house and help with work

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Happy to hear that your daughter ‘s school has a plan to help with home visits so she doesn’t fall behind and is in good spirits. I however, am beginning to feel that my frequent questions are causing you increased stress which is not my intent. I’m merely trying to understand why she doesn’t have the same symptoms as I do when my platelets below 10K, ( increased bruising, irritability, fatigue and depression); must be her youth. A hematocrit ( number of cell in blood) of 32.9 is low(range=36-47%), hemoglobin of 11.6 is on the low end of normal; RBDs of 4.11 is within the normal range. I just don’t understand how those numbers in a child with a platelet count of 1 thousands. I don’t want to cause more stress and I totally understand if prefer that I not communicate with you. Be well, kyriak51

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Good morning. No your questions are not causing further stress. She does have have all the classic symptoms the bruising, she is also very tired and with fatigue. No depression thank goodness but has starting wearing long jeans and shirts so you cant see the bruising. She also has huge blood blisters inside her mouth as well. I appriciate all of your input on this situation. New doctor appointment today so fingers crossed he will do something for her. So please fell free to give feed back cause I am kinda lost on this matter. Hopefully a cbc today so we can get new numbers

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Great, I’m anxiously awaiting to hear about your second opinion clinic visit and your impression of the new doctor. I’m currently caring for 5 year old boy who is on the kidney transplant list so hospitals,central and dialysis lines, GT feedings and nightly peritoneal dialysis are a normal way of life for him and accepted his limitations until his second year in pre school. He is now questioning “why can’t I do all the things my friends are doing why am l different?” We spend a lot of time discussing his kidney disease and his need for a transplant and how different things will be when he gets a new kidney. Children don’t like being different but do better when they talk about it and explain to their friends why they can’t run as fast or go swimming, or have dietary restrictions and has a GT and a dialysis catheter in his abdomen. He, (Leo) knows all the medications and the reasons they are needed which is more than many adults know. He understands and is not ashamed of being different and looking forward to receiving a new kidney. I wish I were more like him and focus more on what I can do and not my limitations but then he’s smarter than I.

Have a good productive, positive day:) kyriak51

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Good morning.....well the second opinion went wonderful. This new doctor sat with me for about 2 hours and explained alot of different options for her(Patrice). So needless to say this is the doctor I am going with. Her numbers are up to 7 and that is great news. The new doctor did start her on steroids higher dose and wants to see her back in 7 days. With all of that being said with Leo needing a kidney transplant absolutely breaks my heart. But he seems to be going with the flow and being a kid! We all wish we were as strong as our children.Hopefully with prayers it wont be long for lil man to get his new kidney. Have you or any family been tested for matching?

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I’m so happy Patrice is finally with the right doctor and her platelets are on the was up; she may not like some the side effects of steroids but she will feel better as counts increase. What dose was she started on? How far must you travel to see this Oncologist? You keep forgetting to tell me whether you live in the US or the UK.

As for Leo, he had his first surgery while still in his mother womb to place a shunt in his failing kidne. Unfortunately the shunt slipped out and he was delivered by C/S at 30 weeks gestation. He received a kidney from his uncle which was not a perfect match and Leo had a massive reaction and died on the operating table but he’s a fighter and the doctors we’re able to resuscitate. Leo has two brothers one is not a match the other one can’t be tested until he is 18 years old which will be this year. I pray he is a match!

Be well:)kyriak51

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I am so sorry.....I live in US. She is on 50 milligrams twice a day for 7 days....plus Pepcid so it does not upset her stomach. The new doctor is 1 1/2 hours away so it is an all day affair for the appointment but sooooo worth it!!!!! Leo definitely is a fighter and the will power to fight is absolutely amazing! You so blessed to have such a strong child and fingers crossed his brother will be a match for him.....praying for your family:)

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Wouldn’t be wild if we live nearby each other! I live in Chicago and am fortunate to live within a 15 mile radius of four major universities medical centers. The fact that you must drive 1 1/2 hours I’m going to assume you live a smaller town. Isn’t great that you have a competent, knowledgeable caring oncologist on your team?

Leo is not my child I’m his nurse and have been caring for him for over four years and love him dearly. I promised him I would stay until we get him a kidney so I’m picking up on positive energy so I can there for him. Have a great day with Patrice:)kyriak51 ( Georgia )

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Hi Chickensmom, haven’t heard from you for awhile, how’s Patrice tolerating the prednisone?Have her platelets increased? How are you doing?:)

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Well good afternoon. Had a doctor appointment yesterday.....on the bright side the prednisone brought her up to 291 and that was wonderful but now that she has been off of them she has dropped to 114.....still not normal but we will def take it! When she came off them it was a nightmare!!!!! Crying,vomiting,migraine......the worst! I had the school calling me telling me she was having a melt down but after a few days she was back to normal...you know 12yr old smarty pants:). I have def learned to just back away and take a deep breath cause if not I will go crazy! How is Leo doing? And thank you for checking on us...means alot!

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OMG, I would kill for a count of 114K!! I’m so happy that Patrice is finally being treated by a hematologist she must be feeling so much better with increased energy and less bruising. You should educate her teachers about the side effects of too rapid withdrawal of steroids, she is not a “12yr old smarty pants”, she responded as expected I have witnessed much worse. Patrice is on her way to recovery and will take some time.

You should read jamesheather1 post. He was diagnosed at 17yrs, received treatment and went into remission for 10 years during which he married and had two beautiful children and enjoyed an active, healthy life. Unfortunately, he recently relapsed and started treatment again and I have no doubt that he will achieve remission again.

Leo is doing well and enjoying winter activities like snowball fights and sleigh rides. He hasn’t missed any school since his August surgery, we are still waiting for a suitable kidney. Be well:)

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